Make the Life that You Want

By Barby Ingle, Columnist

Lately I have been living my dreams, but at the same time realizing how much I have gone through over the years, especially the last two.

Before I got sick I was active, a go-getter, never quit and efficient. Nowadays, I am still as active as I can be, still setting goals and working towards accomplishing them, and trying to keep a positive attitude. But I am not efficient anymore. It’s a large change.

I find that many people who develop an autoimmune condition were overachievers prior to their illness. Did we run ourselves down? Did something in our past prevent us from healing? Or did we just draw the short straw of life?

At this point it doesn’t really matter to me. A life with chronic pain management is my reality. I didn’t do it so well in the beginning and looked for others to fix me. I didn’t take responsibility for creating my own oasis. It was too much just trying to get to the doctor’s office for appointments when not being able to drive.

It took a lot of years, but I got reorganized and also gave myself permission to not be perfect. I came to understand that I will be managing my chronic diseases until I pass away. I can still accomplish many things; it is just going to take me longer.

I was living my dream and it turned into a nightmare. Sound familiar? I began a battle of life and death literally and mentally. 

For those reading that are not familiar with my story, I have been battling chronic pain since 1997, first with endometriosis -- which resulted in a full hysterectomy and left oophorectomy.

Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. Then came temporomandibular joint syndrome (TMJ), hypothyroidism, hypoglycemia, arthritis, gastroparesis and ischemia -- not to forget a loss of balance and coordination that seems to lead to falls and bone breaks. Because my immune system is weakened, if anyone around me is sick, I will soon be as well.  

I lost my physical abilities and was bed bound for years. I spent many years using a wheelchair just to get out of bed and leave the house. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief and answers; and then coming up against healthcare professionals who blow you off or do not believe what you are telling them.

I have learned the hard way that the healthcare system is not always what we are led to believe. I think that from childhood, we should be taught prevention, health responsibilities and health rights. With 1 in 3 Americans living with at least one disease that causes chronic pain, these are important life lessons. 

People look up to their doctors and put total faith in them. But it is important to remember that doctors study a particular practice of medicine. Just because they are a neurologist doesn’t mean they can treat diabetic neuropathy, multiple sclerosis, Lyme disease, or RSD. Each doctor gets a small variety of a medical field and finds a specialty that they love and work on with research and education.

Knowing this will help you get better healthcare. Don’t be afraid to ask questions about your doctor’s education and background. What is their specialty?

I know that there are far too many pain patients who experience something similar to my story. Although each of us is unique and living with our own variations of a chronic disease, having a shared knowledge of overcoming the challenges that we face can be helpful and encouraging.

I had to learn the hard way -- and now share my story to give hope and answers to patients, caregivers and healthcare professionals. I hope by speaking out about my journey it prevents it from happening to others. I enjoy hearing other patient’s stories as well, because it helps me see that I am not alone.

I have had many twists and turns through the medical system, and now encourage the importance of  positive thinking, standing up for ourselves, and improving our knowledge even in the worst of times. Let’s get back to dreaming about big, positive and happy lives.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found on her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.